The Heat and the Cold Can Impact MS Symptoms – Our Community Members Share Their Experiences

Posted on December 29, 2014 by MultipleSclerosis.net

For many people with multiple sclerosis, heat can exacerbate MS symptoms. One of our contributors at MultipleSclerosis.net, Matt, even moved from southern California to Colorado, partly to escape the heat. However, another one of our contributors, Jackie, experiences MS symptoms, especially in her legs, when it is cold. It seems that temperatures affect people with MS in multiple ways, and in a recent article, Stephanie shared her experience. While she is extremely cold during the day, she finds herself turning into a “human torch” at night. As it turns out, many of our community members also overheat at night, or have other issues regulating their body temperature. More than 30 people in our Facebook community commented on Stephanie’s article, and here’s what they had to say:

I have night sweats too!

I had no idea that this was a symptom of my MS, which I was only diagnosed with 2 months ago. I also found out in an earlier post that “sensory overload” is part of it. Just ask my family, Saturday I was a complete jerk with EVERY little noise and I had no idea why. At least I can feel validated and not completely crazy!
I thought I was the only one who suffered from these strange symptoms! I prefer the heat over the cold, which makes my extremities hurt. And I freeze constantly – until I go to sleep. I bury myself under the covers to get warm, but wake up in the middle of the night kicking them off of me because I’m drenched in sweat. It’s miserable and ridiculously confusing!
I’ve been having night sweats for awhile and my neurologist keeps saying it is not my MS, but it didn’t start happening until a year after my diagnosis.
Fantastic post. This is something many people with MS experience as part of life with the condition and will help other people see they are not alone.
I, too, prefer the warm, not hot, weather. I freeze all day, but I can’t stand the covers on in bed.
I thought I was the only one who had the strange symptoms. I haven’t slept because of it for now 3 weeks, and it’s driving me insane.
I thought it was menopause possibly starting early. I never thought my MS did this. It’s horrible, especially when it’s actually cold.
I have the same problem with night sweats. I’ve had every test and no one can explain why I have them. Thanks for the article. I don’t feel so alone.
Yes, I definitely relate! I turn into a Bunsen burner especially late at night and no matter how cold it is I sweat like crazy without even getting all that over heated or hot. I still wake up sweaty.
‪I sleep with ice packs all year long here in Michigan.
This is me, 110%! I’m freezing all day then a human furnace at night. And I can’t handle sleeping without a heavy blanket either from years of doing so before these symptoms.

I’m cold sometimes, and really hot at other times.

My husband and I had to resort to having our own bedrooms, and I often keep a fan on and have eight blankets. This is all because my body temperature is yo-yoing.
My feet always feel cold even though they’re warm especially when I’m in bed .
I get really cold then I get really hot. It’s off and on.
I have that problem too. I thought it was just me, so thank you for posting this. I get night sweats to the point that my shirt will be wet.
I know EXACTLY what you mean! I am freezing cold, and burning up at the exact same moment. But it’s not just at night. I am always uncomfortable.
I thought it was just me! My body is like a house with no insulation. I’m either too hot or too cold.
I’m always warm – my hot flashes ended some time ago. My feet are always cold, even when it’s 100° outside. My circulation is getting so bad.

My Body temperature is hot all the time!

I’ll trade with you! I am like a human torch all the time. I never cool off even in the winter. People think I’m crazy because I don’t wear a jacket even in the winter. It makes it very hard to sleep because my husband is always cold and I am always hot.
I live in IL and it’s Dec. 22. I still wear shorts and a short-sleeved shirt to bed. I still sometimes wake up sweaty.
I don’t get cold often, but I’m always really hot since being diagnosed. It’s winter and I’m running my fan on full blast!

I’m cold all the time!

The only time this overheating ever happened to me was when I was taking Rebif. Now I am a thermostat nightmare – freezing cold all the time, layers and layers of clothing, and at night I have found the one thing to help go from hot to cold with minimal effort – believe it or not – is a sleeping bag. The silk of the bag stays cool, and it warms up like a champ too so it’s easy to toss on and off at a whim without too much effort while TRYING to sleep.

Other:

I also find that using a sleeping bag helps me better adjust temp at night. I found this out by accident in September. Long story short, I was homeless from March of this year until December first. I was living in my car and when the season started shifting here in New England I finally borrowed a sleeping bag for the cooler nights. I slept much better with the sleeping bag than I did with blankets. My car would get stuffy at night with all the windows rolled up yet it was also chilly. The silkiness of the sleeping bag was comforting when I was feeling chilly and it was soothing to lie on top of it when I was feeling a little too warm. Now I have finally moved into an apartment and I don’t want to give the sleeping bag up.
I don’t do well in the heat. AC is for me in the summer, but I have been having cold hands and feet this winter nearly all the time. I am sitting in front of a floor heater nearly all the time now, and I live in California. There’s no way could I ever go or live where there is snow!
I don’t usually get hot or cold, but lately in the last 6 months I have sweating episodes that last about 20 minutes where I am drenched. I’m way past menopause so I know that can’t be it.

What about you? Do you have trouble regulating your body temperature? Do you have a hard time with either hot or cold temperatures? Please share with us in the comments!

Wishing You a Safe and Joyous Holiday Season

Posted on December 22, 2014 by MSAA

There is still time to share holiday greetings and raise awareness about MSAA! Please visit support.mymsaa.org/holidaycards to send a holiday or New Year’s eCard to everyone on your list!

PLEASE NOTE: MSAA’s offices will be closed Wednesday, December 24th, through Sunday, December 28th.

High Performing Charity

Posted on December 19, 2014 by MSAA

by Kimberly Goodrich, CFRE, Senior Director of Development

In our continued quest to show our donors the impact of their support, the Multiple Sclerosis Association of America (MSAA) has been working with the various charity watchdogs to ensure that we are doing our best to communicate that we are worthy of your donations, and that we are working to meet our mission. The most prominent charity watchdogs (GuideStar and Charity Navigator) are working to update and enhance their rating systems to focus less on ratios and more on the impact an organization is having on those who need its services.

America’s Charities is also recognizing those charities that meet the top standards of the different watchdog agencies through their High Performing Charities Initiative. This new program recognizes those nonprofits that have reached the highest levels of accountability, transparency and impact as set by the leading charity rating agencies.

MSAA is proud to announce that we have been recognized as a High Performing Charity by America’s Charities. To earn this distinction we have reached the highest levels as determined by each of the charity rating agencies.

1. We are a member of the BBB Wise Giving Alliance having met all 20 Standards for Charity Accountability in the areas of governance and oversight, measuring effectiveness, finances, fundraising, and informational materials.

2. We have achieved Gold level status with GuideStar for our commitment to transparency. This site also includes our current impact goals and progress toward those goals.

3. Charity Navigator has awarded MSAA with a three star rating based on their assessment of how efficiently we use resources to fulfill our mission, how well we have sustained our programs and services over time and our level of commitment to being accountable and transparent.

Last year your support led directly to helping more people improve their lives. Our toll-free Helpline assisted 6% more people compared to the previous year. We provided ongoing MRI assistance to 9% more people, and diagnostic MRI assistance to 70% more people than the year before. Thank you for being a part of the conversation over the last year and helping us to refine how we communicate our impact. And thank you for trusting MSAA to turn your support into services that directly improve the lives of those living with MS.

Support from our donors is always appreciated! If you would like to donate to MSAA, you may do so here.

*About Kimberly

I am the Senior Director of Development at MSAA and have worked in the nonprofit arena for over 15 years. I love reading, running, theatre and the Green Bay Packers. I volunteer with the Disabled American Veterans teaching outdoor sports like skiing and kayaking to injured veterans and find that I receive much more from them than I am able to give.

Creating New Memories this Holiday Season

Posted on December 17, 2014 by Samantha Schech

“What if Christmas, doesn’t come from a store. What if Christmas…perhaps…means a little bit more!”
― Dr. Seuss, How the Grinch Stole Christmas

Growing up, one of my favorite activities in school was around learning and exploring new cultures and how they celebrate holidays. Being so young and not yet having a chance to explore the world around me, I found it fascinating that people were different from what I assumed was the norm.

For example, in Germany, December 6th is St. Nicholas’ Day and “der Nikolaus” comes to the home of small children and brings gifts, such as sweets and chocolate, and puts them into the shoes of the children, who place them by their doors the night before. Then on the night of December 24th, Father Christmas brings presents to the children.

In Argentina, families celebrate starting Christmas Eve with a large family meal following with a fireworks display at midnight, toasting to Christmas. Many families stay up late into the night meeting with friends and family, then they will sleep all of Christmas Day.

To celebrate the New Year, people in Greece hang an onion on their door to symbolize rebirth and in the Philippines, women wear polka dot dresses and men carry coins in their pockets to symbolize prosperity and happiness for the new year.

The purpose of sharing these variations of holiday celebrations is to show that no matter how you choose to celebrate a holiday this year whether it is Christmas, Hanukkah, Kwanza, remember that it is OK to be different. Value time spent with family, not the gifts that are given, or the decorations that are hung. Create new memories this season and don’t be afraid to veer from the holiday norm. As the Dr. Seuss quote illustrates, the holiday spirit cannot be bought from a store, the holiday is what you make of it.

If you are looking for some inspiration from other countries on how to add some new culture to your holiday, check out the Why Christmas webpage to learn more about Christmas Around the World or 123 New Year to learn about New Year’s Traditions and Customs.

How do you plan to make new memories this holiday season?

References:
http://www.whychristmas.com/cultures/
http://www.123newyear.com/newyear-traditions/philippines.html
http://www.businessinsider.com/new-years-rituals-around-the-world-2013-12#in-greece-people-hang-an-onion-on-their-doors-3

End of Year Reflections

Posted on December 15, 2014 by MSAA

There’s a song lyric that says “It’s hard to remember we’re alive for the first time. It’s hard to remember, it’s hard to remember, we’re alive for the last time” (Modest Mouse). This poignant sentiment sums up a lot about our daily lives.

When you’re in the thick of your day-to-day routine it is easy to become bored or stagnant. When you are struggling with something it can be reflexive to focus only on the challenges and obstacles in your way as opposed to the strength and persistence required to make it through.

It’s easy to get caught up in just another day and forget about the wonder and marvel of life, and all the precious moments that you get to experience. True, not all moments are wonderful, but when you lose the spark of hope and wonder you lose something bigger and not just your inner philosopher.

First, cut yourself some slack, nobody gets everything right. Reflect and recognize that each day is a new one. If you are so inspired you can chose to think that with each day comes opportunity and choice. We may not be able to control everything but we can control some things.

Second, remember that no one’s life is endless. When reflecting on your own precious life you may find that there are opportunities and adventures you want to undertake. As 2014 winds down think about the journeys (metaphorical and physical) that you want to take and write them down. Some people might call it a bucket list, you may never get to all of them but you can keep trying and remembering.

Stress and the Holidays with MS

Posted on December 12, 2014 by Ashley

Can you believe it’s already that time of the year again for the holidays? With everything we have going on in our lives and tacking on multiple sclerosis with it, it can be very hectic.

The holidays are meant to be a time to be with family and enjoy ourselves, not stress over shopping, hosting parties, cooking, etc. Then you tack on the crazy weather we have been having on top of everything else, it’s just down right insane.

(Now maybe some of y’all are used to the cold weather, but it’s a bit of a shock to us down here in the South.)

So I thought I would share some of the things that I do, so that I’m not adding stress to my already stressful life. It’s hard to be completely stress free, so I’m not even going to attempt to say something like “stress free.”

Sometimes it feels like there aren’t enough hours in the day to get everything that we need to get done, completed.

For me, when the day is coming to a close, I feel like it’s family time and time to relax. Not to run around ‘till I’m exhausted getting Christmas shopping done, etc. I don’t have the energy and/or strength to stand in lines, to fight the crowds, and everything else that comes along with holiday shopping.

Many sales aren’t just limited to ‘in-store’ purchases, but are also online. One thing I’ve done in the past – and will do this year as well, is shopping online. I know it’s not the same thing as actually going to the store and buying things, but it’s better for me and my MS, so that’s what I’m taking in to account. I don’t want to run down my body or cause my MS to flare-up trying to shop for the holidays. Where is the fun in that?

You would be surprised on what all is offered online. I love shopping at Amazon, because they seem to have almost everything available because they have outside vendors. Plus, a lot of the time when you’re shopping online certain stores offer free shipping if your total price is over a certain limit. Even if you have to pay for shipping, I think that the same amount would go towards gas if you’re actually driving around and shopping.

Now, whether you are shopping online or in the store, see if they offer gift-wrapping. This is a very big problem for me. I have spasticity in my hands, so if I’m trying to wrap multiple gifts at a time, my hands start giving me issues, and then the wrapping isn’t so pretty.

If you enjoy doing your own gift-wrapping, try and make a schedule out of it, so that you aren’t wrapping everything at once. I’ve done that before, and it wasn’t nice at all.

I know that it can be annoying that we have to make certain changes in our ‘routine,’ but I feel that those changes are worth it personally. By doing some simple, small changes, I can make sure that I’m not going to ‘pay for it’ from my MS in the future.

If you’re hosting a holiday event at your house, kudos to you! I don’t think I could handle all that. But if you are one of those people, don’t feel like you have to do ALL of the cooking for the gathering. Ask family/friends to bring certain dishes. Have a little sign-up sheet online, Google Docs, or something.

Something I have come to absolutely love is my crock-pot. This way it prevents standing for a long period of time cooking certain things. I can throw things for a recipe in to my crock-pot and turn it on, and it’s one less thing to worry about.

I love getting recipes on Pinterest and similar websites. If you just Google search “Holiday Crockpot Recipes,” I’m sure there will be plenty of results to choose from.

One last note… If you are going to make a run to the store to get your ingredients for a recipe, or anything else for that matter, have a list put together. I like to organize my list by section; this way I don’t have to scan through the entire list every time I look at it.

Most importantly, have fun with your family and friends. This is a time to spend time together, and be thankful for what we have been blessed with. I know it’s easier said than done, but it’s okay to allow someone to help you out. There is no shame in asking someone to help out with simple tasks.

Happy Holidays, everyone!

Ashley Ringstaff

MSWorld Volunteer

www.msworld.org

December 2014 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

Posted on December 10, 2014 by John MSAA

A special seasonal December Artist of the Month:
David Desjardins – Union, ME

About the Artist:

“I consider myself to be a very positive and optimistic person, but it was difficult maintaining that attitude when I first learned of my diagnosis, even for me! I’ve always loved to paint, but there constantly seemed to be a situation or reason that demanded my immediate attention first. Now, however, I choose to do something creative with my time rather than giving in entirely to my illness, sitting in a corner mourning my losses.

I am so honored to participate in my second Art Showcase, and I am humbled to be in the company of so many talented artists. I used to paint only for my own enjoyment, but now when I hear how others enjoy my work it really makes my day!”

Air Travel Tips for the MS Community

Posted on December 8, 2014 by MSAA

By: Matt Cavallo

As the holidays approach, many of us living with a chronic illness are fretting holiday travel. Maybe you would like to travel to see friends or loved ones, but are hesitant because of your illness. You are not alone. Travel is stressful for everyone. Airports are big, busy and fast-paced. Security lines can be long and the thought of standing, unpacking, and repacking at TSA is enough to unravel even the most seasoned traveler. Compound traveling with the upcoming holiday lines and ticket prices and it may be enough for you to forego holiday travel and just stay home.

If you need to travel during the holidays and you are living with a chronic illness, there are several steps that you can take to ensure your airport experience doesn’t exacerbate your illness. The following steps will ensure that your holiday airport experience is as smooth as possible:

Five Steps to Stress-Free Air Travel for People Living with MS

1. Book your travel early. As a rule of thumb, booking your ticket fifty days in advance will get you favorable ticket prices, preferred seating (unless your airline has open seating like Southwest) and better flight time selections. Business travelers typically book fourteen days in advance, so if you wait to the last minute seating will be limited, as will flights, and the price will be higher.

2. Fly during off hours or off days. Much like morning traffic, the airport has rush hours too. My preference is to get the first flight of the day, even if it means being at the airport before the sun comes up. Airports are generally running once the sun goes up until the sun goes down. Whatever you do, avoid the last flight of the day, especially if you have a connection. If you are on the last flight, you have a greater likelihood of missing connections and then being rebooked on a flight the next morning. Mondays, Thursday nights and Friday mornings are business travel days. Sundays can be busy as well. Tuesday, Wednesday and Saturday are light traffic days and typically have cheaper flights.

3. Notify the ticketing agent or gate agent of your condition. If the airport and airline staff are aware of your illness, you can get wheelchair or transportation service (if necessary), medical clearance to get to the front of the TSA screening line and pre-boarding status at the airline. If you have trouble standing or waiting in line, be sure to tell the agents or TSA that you are a fall risk and have weight-bearing precautions making you a risk to stand in line for long periods of time. The number one goal at the airport is the safety of passengers and if you are a fall risk they will make every effort to prevent you from falling.

4. Limit carry-on luggage. Checking a bag is an extra cost (on most airlines), but that cost is well worth it. Check the TSA website for the items that they allow to get through screening. Make sure that if you have to pack liquids in your carry-on, they are a size that meets the TSA standard. They will confiscate any items that are prohibited for travel. Also, if you have limited strength or range-of-motion, it can be difficult lifting your carry-ons to the overhead storage.

5. Relax. The stress and anxiety of flying has many components that are out of your control. Stressing over the things you cannot control during air travel can be enough to make you sick and ruin your trip. If you follow the four preceding steps, you will be able to minimize most stressful airport situations. Unforeseen stressors like weather delays, mechanical failure and gate changes are situations that you cannot predict. If you can relax and take these steps into mind, knowing that whatever unforeseen delays are out of control, you will feel much better both during and after travel.

I fly a lot. Four out of my last six flights have had some kind of issue. I was delayed three hours on a one hour flight to Palm Springs. They loaded the plane, only to unload it and switch us over to a new plane after the delay.

Another time, I arrived in Detroit with plenty of time to make my connection to Akron, but there was no gate available. They said they notified the gate agents, but when I finally arrived at my transfer gate after a half hour delay, the gate agent had just shut the door. And even though four of us were standing there, she refused to open it or hold the plane per policy.

In this case, I didn’t take my own advice. I was on the last flight of the day and they couldn’t get me to Akron until 3:00 PM the following day. I had a speech in the morning, so I had to drive overnight and got to Akron at 4:15 AM. I was tired and groggy, but luckily able to caffeinate myself enough to give a great speech. Even though it worked out for me, the stress and delay were not worth going through that again.

As always, my advice comes from my mistakes. As a seasoned travel, I understand the do’s and don’ts of air travel. I hope that these steps help to make all of your air travel stress free. Safe travels!

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

Holidays Past

Posted on December 5, 2014 by Angel Blair

The holidays are a time where people come together to celebrate the joy of the season, to honor past holiday traditions or to create new ones for generations to come. Holidays of the past can foster different types of memories – fond ones, funny ones, and those, “I still can’t believe that happened!” moments. For me, the holidays were always a hectic time, where you never quite knew what was going to happen. I do hold some fond moments about old traditions in our family, and though they may seem odd to others, every family is different and has their own ways of celebrating.

In my family, Christmas Eve was the night our extended family would get together to celebrate the holiday and exchange gifts through a Pollyanna. But the gift exchange and celebrating couldn’t happen until midnight, when it was really the start of Christmas day. As a child this was agony, as half of us would fall asleep before the countdown to midnight even began, and the rest of us were so tired that when it did come time to open presents and rejoice, we didn’t really appreciate the tradition at that late hour. However, this still remains a heartwarming memory for me, because for some reason or other throughout the years, this tradition is no longer. As more children were born into the family and members didn’t want to travel home so late, gifts are now exchanged at leisure, with no countdown or anticipation as years past. It’s still a nice tradition, but it’s different, and now we take time to reminisce about those past holiday memories and look back with joy.

Each holiday season brings varied traditions, moments, and feelings that are unique to each person and family celebrating the occasion. And even though things may change through the years, making holidays different from ones that came before, there are still memories to be made and joy to experience.

What are some of your holiday memories?

Insurance Enrollment and the MS Community

Posted on December 3, 2014 by Samantha Schech

While the 2014 year slowly comes to an end and individuals start to make their end of year plans, there are still two important dates to keep in mind in regards to open enrollment for health insurance. For those who are uninsured, or who possibly want to make some changes to a pre-existing Medicare plan, open enrollment allows individuals to make changes without penalty.

Medicare open enrollment ends Sunday, December 7th. Up until this date, changes can be made allowing an individual to switch from Original Medicare to a Medicare Advantage Plan, or vice versa. A switch from one Medicare Advantage Plan to another Medicare Advantage Plan or to a plan that offers different drug coverage can be made as well. This is especially important to the MS community as medications can often change. If the doctor prescribes a medication that is not covered under a drug formulary, other drug coverage options can be explored that may be more suited to your prescription needs. To explore options, contact Medicare directly at (800) 633-4227 or visit www.medicare.gov.

For more complex issues with Medicare, the Medicare Rights Center offers a helpline to answer your questions about insurance choices as well as Medicare rights and protections. You can reach the Medicare Rights Center at 1-800-333-4114 or visit www.medicarerights.org.

The Open Enrollment Period for individuals eligible to enroll in the Marketplace for a Qualified Health Plan for coverage starting in 2015 is now through February 15, 2015. Individuals can enroll in a plan in the Marketplace by visiting www.healthcare.gov, or by calling (800) 318-2596. These plans are available to those who are uninsured, losing insurance, or who would like to make a change to their existing plan. If you purchased a plan in the previous Open Enrollment period and were not happy with that plan, now is the time to review other options and make a switch if available.

For more information regarding insurance, MSAA’s My Health Insurance Guide is aimed at assisting the MS community with understanding the many details surrounding today’s health insurance options.

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